Thoughts on Assessing Schools and School Programs: TPGA Project

So I'm working on a piece on autism schools and school programs, and specifically on how to choose these, for The Thinking Person's Guide to Autism. I'm also working on a piece about IEPs and IEP meetings. I know, not exactly 'fun' topics, and some of my favorites.

Remember, I think ancient Greek grammar is fun (there, I've said it; I really do). And I asked to teach Elementary Latin at 8am Tuesdays and Fridays next fall—with a class on Roman law directly after at 9.30am.

Anyways, in starting to write these pieces for TPGA, I've felt overwhelmd in the face of the size, scope, and seriousness of these topics. I want to write something that's non-threatening and relatively easy to read, rather than, ahem, 'dissertation-ish'—no point in making a daunting topic daunting. To that end, I'm setting down some preliminary thoughts and notes here. And, I'd love to know what you think parents in particular and people in general should know in assessing schools and school programs for students on the spectrum—programs both public and private, in-district and out-of-district; programs for children at a variety of ages (preschool, elementary, middle school, high school—I am not going to touch college/university!); programs and schools that involve mainstreaming and inclusion, and programs that are (literally) separate schools/centers. Teacher training and staff support and are the speech therapists and OTs and PTs on staff or just contracted out? What about the behaviorists: Are they on staff? Outside consultants? Does it matter whether or not they have BCBAs? Is there a nurse on staff who understands the medical and health issues faced by children on the autism spectrum and with disabilities?

I'll start by writing about where Charlie is school-wise now—about how Charlie is the boy in the photo above, home after a good day at school and preparing himself a snack.

Tuesday Charlie woke at 5am and he and I went for ab early morning walk. He gathered his things and went to wait in the car while I finished packing his lunch and Jim got ready; Charlie breakfasted (en auto) on a partially finished pack of sushi.

(Hey, not bad from a nutritional perspective—-with rice, fish, and cucumbers and avocados, he got in three out of the four food groups from that pack of sushi.)

Jim and Charlie left about 15 minutes earlier than they had to which meant (1) they got in a fun Dad 'n' son ride around the Big Autism Center, a ride which Charlie would have us do most days if he could and (2) they didn't miss any of Phil Schaap. I thought Charlie might be sleepy and take a snooze at school (he hadn't gone to bed till almost 11pm Monday night) but the report was that he not only hadn't, he'd had a good day.

Charlie directed me to stop at a gas station convenience store where he did something that we're counting as new, though it may seem like a small detail to many: He sighted a small red box of Duncan Hines brownie mix and asked to get it. I was pretty sure (and was later to be proved right) that Charlie wouldn't touch the brownies once baked. Of course, I still had the disastrous incident of the red (Betty Crocker) brownie box in my mind. Prior to that incident at a local grocery store, I had tried many a time to get Charlie to choose a different box of brownie mix and he'd each time adamantly said 'NO.' So I reminded myself 'This is a big little' as Charlie stood holding onto the little red box saying 'I want, yes, brownies.'

And so we got the mix, and, once home, made brownies, and Charlie–who'd been very fixated on the process of making the Betty Crocker mix we used to get, down to insisting on getting 'two eggs'—adapted nicely. This mix only called for one egg and that's exactly how many he took out from the carton, after adding the oil and water I had poured into a measuring cup. He stirred a little and walked away once that part was over: Time for the computer.

(After washing his hands, of course.)

(But then the fries and ketchup.)

After a short while, Charlie asked for his bike helmet and he and Jim had a good workout in a great deal of traffic; something about the end of the school year and the warm weather seems to bring out the cars and people. Charlie was fidgety once back, trying a little watermelon and then asking for lemonade, and then asking again and again for more before settling down on the old blue couch with some music (ah, those Disney tunes) and becoming visibly more smiley and peaceful easy-feeling. By 7pm, he told us he was 'all done' with the computer and went over by his shoes, and announced 'bed time.' 40 minutes later, out.

An hour and a half hour later, up. And soon off for a night walk in the cool air with Jim. Following snacking/late dinner and some stomp-running around the house, Charlie went back to bed, in easy expectation that tomorrow would bring another day of the same, starting with school.

Next Monday is Charlie's last day of school. It's a bit later than it was scheduled to be, due to allthosesnow days earlier this year. He has just over a week off and then, on June 30th, begins 6 weeks of Extended School Year (ESY) = summer school, 5 days a week and each school day just a half-hour shorter than during the regular school year. His teacher will be the same though not the aides (that's all right; the aides in his class have changed a couple of times since he started at the BAC last November) and they'll pretty much be doing the same things. In other words, from Charlie's and our perspective, this is a just-right ESY set-up: No real changes from the usual school year.

It's been a good school year.

That is, it's been good since Charlie started at the Big Autism Center in November after being in an autism/ABA classroom in a public middle school that, it was more than clear, was no longer appropriate.

This has also been the year of me biting my tongue. Charlie could have attended the BAC several months earlier, perhaps even last June. As I've written, we moved to another town in June of 2006 so Charlie could attend that town's in-district autism program. He had two good years in an elementary school but everything changed when he entered middle school in June of 2008 and the experience has left me thinking hard about what exactly one is looking for in choosing a school for a child on the autism spectrum.

Prior to Charlie going to the BAC, I spent last spring and summer visiting many of the private autism schools here in New Jersey. There are quite a few (here's a list from AutismNJ) with a certain few considered the most desirable get your child into. All of these schools had the methodology we thought we needed—ABA, delivered inte
nsely and incorporated into every aspect of the students' learning. They also had a 1:1 student radio. But they only really accept students who are very—three years old—and spots don't tend to open up as the students stay at the school for the duration of their education.

The student-to-staff ratio at the BAC is 2:1 (though the ratio often works out more to 1:1 as a student might be absent, someone might be in training, or there's just someone around who can be an extra person in a classroom). It's a 'behavioral school' but the teaching isn't done with the strict exactitude as at the other schools. There are 'behavior specialists' on staff but they don't (as far as I know) have BCBAs. The BAC occupies a huge building that has a lot of open space and a high ceiling so Charlie can go on walks anytime, no worries about the weather. The BAC's where he gradually stopped wearing the helmet that the public autism program's outside consultant had him wear. When I go to meetings with Charlie's teacher and the behaviorist, they always say 'we love having Charlie here; he's such a great kid!'.

So maybe my first point for my essay is going to be something along the lines of: Yes, make sure all the details of methodology, sufficient and sufficiently trained and supported staff, are there. Be attuned to the physical plant: Your child will be spending a lot of time in it. But be wary of getting too hung up, too set and insistent, some one school (especially if that school has a couple hundred children vying for a very few places). Don't overlook kindness—in the teachers, in the staff, in the director.

Do you sense that the staff really wants to have your child there?

The child you know in front of you, not the child the staff or anyone wishes to 'recover' the child into? Because it's that child in front of you who needs to be taught, in ways that recognize his neurological, sensory, and communicative differences and challenges.

I think I'm getting an idea of where my TPGA schools piece might be going.

Comments

Speaking from some…less than positive…experiences with my brother’s high school teachers, I would say the most important thing is to find a teacher that is willing to listen to you.
I can’t tell you how many times we explained that he had no depth perception, only to have the teachers act like (a) it was new information and (b) it couldn’t possibly have anything to do with why he had trouble navigating crowded high school hallways.
That’s a hard thing to judge, of course, until you’ve had some experience, but to me it’s a *huge* priority.

As a general thought, I agree with Jennifer, teachers who listen (we have had our share of those who don’t too). Other than that, different world so I can’t help. I wonder what considerations were taken into account before the BAC was built? Or is it’s spaciousness just by chance?
Great about the brownies! I think that was good self control on Charlies part with the eggs.

I think you’re on the right track for your TPGA article – that being that when you’re looking for a school for your child, you’re looking for a school for your child, and not a political statement, or a philosophical stance. It doesn’t really matter what you “believe in,” educationally or psychologically; what’s important is finding a school, program, teachers, support staff who will be able to work successfully with your child. As we look at schools, most of us know, in our guts, when we’ve found the right place, and when we’ve found the *exact* wrong place. Even when (especially when?) it goes against our expectations of what we thought we were looking for, we need to pay close attention to those feelings. We know our kids well, and our kids will be spending many, many hours, days, weeks and months in these environments we choose for them.

@Jennifer,
Point duly noted—because it’s the teacher who’s really spends day in and day out with a child.
I am pretty sure that Charlie has the same teacher next year but this has not been officially confirmed. Transitioning from one teacher to the next (especially a teacher who’s been really good like the current teacher Charlie has) has always been difficult (for Charlie—for, ahem, me).

@Judy T,
I really like how you put it, about keeping (or trying to keep) philosophical or political views out of decisions about schools for our kids—not easy! I was so caught up in thinking that a school for Charlie had to have the intensive ABA and the 1:1 ratio; anything else was not on ‘the list.’ We just kind of ended up at the BAC—Charlie would have gone to it had we never moved to the other town, though he would have had some years at an older site, as the BAC was just finished about 2 or less years ago.
I do know that when Charlie was much younger, it was even harder for me to put my political/philosophical stances aside. He’d done so well initially with lots of ABA and it seemed the best thing to continue with that. I’ve been trying to think of when it started to feel that he was stuck in the ‘ABA box’—certainly when he started middle school, on and off before that. Hindsight.

@Emma,
I don’t know how much the need for such a big space and its effects (and benefits) were taken into consideration. I think the plans were to have a gym, pool, greenhouse, and spaces that look like a bank-hardware store-grocery store-restaurant-hotel room, so students could practice life skills. (The school calls those ‘labs’ as in the ‘hardware store lab’ which I find a bit odd terminology-wise; I keep getting an image of everyone donning white lab coats; must be me.)
I do think they knew they’d want the school to be large (200+ kids) and they wanted sufficient space. You can’t miss the place, that’s for sure. Residents in the area were very concerned about how traffic would be affected with all the buses but I don’t think it’s a huge issue, based on our driving Charlie back and forth—it is quite an operation to see the kids getting off and on the buses in the morning!

Kristina, when you say, “This has also been the year of me biting my tongue,” do you mean in relation to your old school district? Or something else? Do you now wish that Charlie could have attended the BAC earlier than he did? It’s turned out to be such a boon for all of you that you all must be celebrating the good things that have occurred.
I detect in Charlie a real competence and fascination with the *making* of food, its preparation and creation-systems. You mentioned that he was fascinated with your sushi prep. Are there other things besides brownies that he likes to prepare – maybe something he would be interested in eating once it was done?

My personal twist on this is that it’s not any specific ratio or type of training that the staff has, but the teacher’s (and principal’s) attitude that makes the biggest difference.
Having a teacher that believes in you, and a principal that believes in including all children (and the potential of all children) are the things (IMO) that make the biggest difference in how well a given student will perform.
Joe

*wow*
I would just be happy if my child could be potty-trained. I would just be happy if I knew that the local elementaries knew what they were doing so they could teach me how to handle things, too. (I have never had a low-verbal child before. I don’t pretend to know all the good techniques to help people like Woodjie.)
If they locked my ‘standard issue’ (speechwise) autistic son into closets, what will they do with him?
And yet… I feel unqualified to teach him, esp. in regard to the fact that I am teaching two older homeschoolers, have two teens who need my afternoons, and a neurotypical toddler who will likely homeschool and stuff like laundry and cleaning occasionally also need to make my list.
How to make everyone “win” when there is only one of me, I have no clue. I looked into community resources and most of these you have to be super-poor or have a formal diagnosis and wait several years. They most certainly will not enable homeschooling…
So what I will do I have no clue yet. Concerned. 😦

@Louise,
I didn’t have too much that was complimentary to say about Charlie’s current school prior to his going there; a good lesson that when we most think ourselves right, we can be quite wrong.
I’m not sure how interested Charlie is in cooking other things; his interest in the brownie making is a bit formulaic. His liking for sushi has a lot to do with the packaging—the plastic containers it comes in and so forth. I’ve been doing more cooking so he certainly has the chance to join in—-not going to push him!
@Joe,
yes about attitudes—wondering how these can be fostered so when that one teacher or other staff person leaves, things continue to be good.

@Mrs. C.,
I don’t know if this addresses your concerns but—I guess another way to put the school question is, what can one do to make whatever situation one’s child is currently in, as good/appropriate/etc. as it might be.
By the time we agreed that Charlie would go to the BAC, it felt like we had reached our last resort, as far as a school placement. We had thought of homeschooling but for many reasons knew that Charlie would be best off in an actual school. The BAC just kind of had to work.
From the first meeting I adapted an attitude that was very different from the semi-combative one I had always had and said to myself, I can’t act like the expert or that I know better—-I really did want to have some place that Charlie could go to. When problems arose (as they inevitably have) I asked for meetings and these were held with Charlie’s teacher and the behaviorist and the principal (I was wary of her presence at first and then found it good to have someone else there with input). We also have been fortunate to have been able to have Charlie’s old ABA consultant (a BCBA) observing at intervals.
This latest experience taught me, sometimes you have to just go with what there is and take the smallest kinds of progress as a plus—granted, Charlie has always had a formal diagnosis and clearly a lot of needs.
I just don’t think I would ever be up to homeschooling—

One thing we have struggled long and hard with, for Jeremy, is the iatrogenic effect that even an otherwise good special-ed placement can have: that the things that reinforce the child’s awareness that s/he “rides the short bus” become a self-fulfilling prophecy that limits what s/he thinks s/he is capable of doing.

Kristina, I don’t know that I am up to homeschooling, either, when we’re talking about such specific and special needs… just feel torn. The change in attitude is something I may have to consider for my situation, esp. if Woodjie qualifies for a special autism room later on. He wouldn’t go to the same elementary then. 🙂

I have friends who do homeschool and are quite prepared to do it—Charlie really needs a change of scenery and to be with someone besides his parents. Hope things have been pretty well for Woodjie and all of yours—Charlie wasn’t writing the letters or saying their sounds till about 1 1/2 – 2 years ago.
I also wanted to say, I was really glad to see your name on a comment. Thank you for reading here!